The walk to find a cure for my brother-in-law Kevin’s disease – the annual Team Hope walk in Riverside Park – is next Saturday, September 12. The walk is organized by the Huntington’s Disease Society of America, and it will raise funds to find a cure for Huntington’s Disease (HD).

Many of you were extremely generous in donating last year—so much so that "Team Kev" raised more money than any other team in the nation, and a significant portion of all donations. Once again, I thank you all for that. Your kindness to me and to Kevin means a lot to me.

I realize that financially, this has been a hard year for many of us. I will completely understand if you are not able to make a contribution at this time, or if you have other charitable priorities. There are many urgent, good causes out there, many of them helping more people than will ever have Huntington’s.

All I can do is say that this is part of the problem. "Only" about 30,000 Americans suffer now from HD, with another 150,000 at risk. For that very reason, Huntington’s is what the FDA calls an "orphan disease." It is not economically feasible for the drug companies to come up with a cure on their own. Thus, curing HD depends more than many other illnesses on private and public contributions.

Huntington’s, just to refresh your memories on this jolly subject, is a debilitating illness caused by the actual shrinking of the brain. Its effects are similar to that of Alzheimer’s, although it can afflict people at any age. There is also a physical component that usually consists of exaggerated, involuntary movements; before the modern era, it was commonly known as St. Vitus’ Dance. Worse than that, Huntington’s gradually strips away each level of one’s personality, turning one into a living caricature of one’s former self. It can be devastating to see it develop in a loved one.

Best wishes,

Matt

 

Hi everyone,